Hadley's Juvenile Arthritis Journey July is Juvenile Arthritis Awareness Month, an observance dedicated to spreading awareness of this condition that affects 300,000 children nationwide. Hadley was diagnosed with juvenile idiopathic arthritis in June 2016. Her parents, Sara and Andy, had first noticed Hadley’s symptoms around her second birthday. “When Hadley started walking funny, we didn’t know what it was, and the doctors thought it might be Lyme disease,” explained Sara to the Indiana Gazette. After Hadley’s symptoms intensified during a beach vacation, Sara recalled what her childhood friend Annie had gone through when she was diagnosed with juvenile rheumatoid arthritis. “The symptoms were similar, so when I remembered some of the stuff that Annie went through, I asked, ‘Has anyone thought of arthritis?’” In the three years since her diagnosis, Hadley has kept active with swimming lessons and a local running program while taking regular prescription pain medications. A typical morning begins with discomfort, though her medicine, bathing with Epsom salts, and quality time with her stuffed bear, Champ, helps Hadley feel better as the day goes on. Every five or six months, Hadley returns to UPMC Children’s Hospital of Pittsburgh to get her affected joints drained and to receive corticosteroid injections, working with her rheumatologist, Margalit E. Rosenkranz, MD. Now five years old, Hadley looks forward to beginning kindergarten in the fall and spreading awareness of just how full a childhood can be when living with juvenile arthritis. Donate Now Celebrating 30 Years of the Down Syndrome Center Children’s Hospital established the Down Syndrome Center of Western Pennsylvania in 1989, making it one of the oldest centers in the United States focused on the care of people with Down syndrome. The Down Syndrome Center provides families with the tools they need to become educated and strong advocates for children and adolescents with Down syndrome, providing specialty health care, support, consultations, and more to children, adolescents, and adults with Down syndrome as well as comprehensive medical assessments and referral of patients to specialists and adult services. “Our pediatric center sees over 500 patients a year, and our adult center sees an additional 200 patients a year,” explains Kishore Vellody, MD, medical director, Down Syndrome Center. Dr. Vellody also serves as president of the National Down Syndrome Congress, which hosted its 2019 annual convention in Pittsburgh. On Friday, June 28, 2019, at the opening plenary of the convention, the Down Syndrome Center was honored with the President’s Award, recognizing the center's commitment to providing evidence-based, comprehensive healthcare for individuals with Down syndrome over the past 30 years. Read More A Heartfelt Summer Camp Experience From Sunday, June 9, through Saturday, June 15, the Dr. Bill Neches Heart Camp welcomed more than 150 children with heart conditions from across the region, providing opportunities for activities like sports, crafts, and fishing as well as the opportunity for its young campers to make new friends who understand what they’ve gone through and the challenges they’ve overcome. Ranging from ages 8 to 15, children with congenital heart disease (CHD) have enjoyed this week of fun activities and acceptance for 29 years since it was founded in 1991 by Keith McIntire and Bill Neches, MD, a now-retired pediatric cardiologist. Keith was born with Tetralogy of Fallot with Absent Pulmonary Leaflets, a rare heart defect, and underwent his first surgery at Children’s Hospital when he was only nine months old. “When Dr. Neches came to me with the idea of this camp, he wanted to bring kids with CHD together to show them that they aren’t alone, different, or too fragile to run and play and live their lives,” said Keith. “The camp encourages kids to be kids without allowing heart disease to limit them.” This year, Heart Camp attendees and counselors at YMCA Camp Kon-O-Kwee Spencer in Fombell, Pennsylvania, welcomed Madeleine Morris Collins – also known as Miss West Virginia – who was born with Tetralogy of Fallot, like Keith, and shared with the campers how her heart defect didn’t stop her from achieving her dreams. Read more about Miss West Virginia's visit to Heart Camp in this GMA article. Read More Remembering Dr. Zuberbuhler One of the first pediatric cardiologists in the region, James R. Zuberbuhler, MD, dedicated his career to saving children’s lives and advancing research in the little-known field of pediatric cardiology. Dr. Zuberbuhler died on Monday, June 24, following a brief illness. Dr. Zuberbuhler joined the Children’s Hospital staff in 1961 with a part-time position that turned into a full-time role by 1963 and, four years later, he was named director of pediatric cardiology. Known as “Zube” to the hospital community, he spent more than 35 years as an integral and beloved member of the Children’s team, overseeing the growth of the division to become a major center for teaching, clinical investigation, and world-class care for children and adults with congenital heart disease. Among his contributions are more than 100 publications, including the authoritative guide for doctors diagnosing congenital heart disease, and the results of an expedition he led to Tibet to research the effects of higher altitudes on congenital heart problems. Zube’s sense of humor, warmth, and indefatigable enthusiasm endeared him to colleagues, students, and patients and their families as he trained, mentored, and inspired an entire generation of medical students, pediatric residents, and cardiology fellows over more than three decades at Children’s. In addition to his pioneering leadership of the pediatric cardiology division, Dr. Zuberbuhler also served as the hospital’s acting chair of pediatrics and as medical director for two years. Dr. Zuberbuhler retired in 2003, devoting his retirement to advancing his passionate studies of nature, cataloging more than 900 species of wildflowers, trees, and plants. He was dedicated to his family including Jan, his wife of 60 years, and their four children and 10 grandchildren. Read More Kohl's Cares Unwind this summer at unWINEd Get ready to rock for Children's! Since 2004, Kohl’s Cares has generously supported injury prevention programming at UPMC Children’s. With Kohl’s support, the Injury Prevention Center has already held 14 helmet-fitting events this year and is in the process of supplying helmets and bicycle safety education to all the students in Pittsburgh Public Schools’ Summer Dreamers Academy. Families can bring their children to community events or to the Safety Center at Children’s Monday through Friday from noon to 4 p.m. to have them fitted for a free helmet. Join the Cancer and Blood Disorders Auxiliary of Children's Hospital of Pittsburgh Foundation on Tuesday, Aug. 6, for the eighth annual unWINEd: A Toast to Hope for a Cure, held at the beautiful Narcisi Winery in Gibsonia, Pennsylvania. This 21+ event will include wine tastings, auction items, entertainment, and much more! All proceeds will benefit the Division of Pediatric Hematology/Oncology and the Division of Blood and Marrow Transplantation (BMT) and Cellular Therapies at UPMC Children's. The 12th annual DVE Rocks Children’s Radiothon will be broadcasting live from UPMC Children’s on Thursday, Sept. 19, and Friday, Sept. 20! Join Randy Baumann and the DVE Morning Show, Michele Michaels, and on-air talent from 102.5 WDVE as they join patient families, hospital staff, and volunteers for an inspiring two days of radio! Read More Register Now Read More These inspiring stories, groundbreaking advancements, and exciting events were made possible by the generous support of Children’s Hospital of Pittsburgh Foundation’s donors and partners.